Adult ASD: Receiving a Diagnosis

This is part 11 in the “I Think I Might Be Autistic” series.

The day of the follow-up appointment finally arrived. As I rode the elevator up to the fourth floor, I felt my anxiety skyrocketing. I focused on breathing. I mentally rehearsed what I was going to say to the receptionist.

“I have a 2 o’clock appointment with Dr. H” isn’t complex conversation, but when I’m at a DEFCON 1 anxiety level, I can forget my own name.

The ten minutes I spent sitting in the waiting room felt interminable. I was contemplating a dash to the restroom when Dr. H poked his head around the corner and called me in.

If you want an example of how, er, unusual my conversation style can be when my social resources are low, this is the way our conversation began:

Dr. H: “Good to see you again. What’s new since you were here last time?”

Me: “You rearranged your chairs.”

Well, he had. The last time I visited, there was one guest chair facing his desk. Now there were three. That was not only new, it was messing with me, because I had to decide which one to sit in and none of the options was comfortable.

Too many chairs!
Too many chairs!

I settled on the middle chair and waited patiently while he made small talk about I have no idea what. Okay, semi-patiently. There was some discreet stimming happening. Maybe a lot.

Eventually–and I think the delay was him wanting to break it to me gently–he got around to telling me first how well I did on the cognitive testing and then that I’m clearly on the autism spectrum. I was relieved and yet somehow it felt unreal. For a moment I thought maybe I was dreaming because I’d been having a lot of dreams about the evaluation and follow-up appointment.

My nonresponse confused him, I think. Over the course of our one-hour appointment, he asked me three times how I was feeling about the diagnosis. Each time I said something like, “I guess I’m not that surprised.” I thought I’d feel something more strongly, but I was too focused on the information he was giving me about my test results to have any real feelings.

Seeing my cognitive processes summed up in a neat table of numbers and percentiles was fascinating. I hadn’t had a full IQ test since I was kid and back then no one would let me see the results.

Overall, the tests told me what I had suspected. My working memory, elements of executive functioning and verbal functioning are impaired. My nonverbal reasoning and verbal comprehension are significant strengths. The rest of my test scores fell in the average ranges.

I passed the ADHD test with flying colors, meaning that my distractibility is related to AS/executive function. This wasn’t a surprise, because my attention problems are situational rather than across the board.

The tests also illustrate how it’s possible for me to be both very literate and not very verbal. I scored highly on comprehension, spelling and vocabulary–receptive language skills or the ability to understand and process incoming words. I scored poorly on visual to verbal tasks (translating written words into speech), verbal working memory (remembering and repeating back spoken words) and verbal fluency (describing or listing words verbally). These are all expressive language skills.

There is definitely faulty wiring between my thoughts and my speech. There is a measurable ย discrepancy between my receptive and expressive language capacity. It feels good to have concrete evidence.

You’ll often hear that ASD is associated with an uneven or spiky cognitive profile. While everyone has some variation in their cognitive abilities, the variation tends to be within a particular band (i.e. clustered around the 70th and 80th percentiles) rather than widely dispersed.

To give you an idea of how dramatically disparate the cognitive abilities of autistic individuals can be, I had a bunch of scores in the 98th and 99th percentiles, but I also had a cluster that included the 8th, 10th and 12th percentile. I am simultaneously off-the-charts extraordinary and bottom-of-the-barrel impaired. In yet other areas, I’m perfectly average.

One thing that really struck me in reading about spiky cognitive profiles and autism is that a profile like mine (nonverbal > verbal) is more strongly associated with impaired social skills than the reverse profile. It’s also interesting to note that the dissociation between nonverbal and verbal abilities grows more significant with age.

After reviewing the test results and confirming that I was okay with my diagnosis, Dr. H emphasized that he was most concerned about my social anxiety and felt that counseling would help me cope better with my daily life. He gave me a referral to a counselor experienced in working with autistic adults and I agreed to think about it. After thinking about it a great deal, I wrote this.

It took awhile for my diagnosis to sink in. At first, it didn’t feel real. In a way, I’d known for a while that I was an aspie. Dr. H even jokingly said at one point toward the end of our follow-up appointment, “You made a good diagnosis, doctor.”

In the days that followed, I slowly started to feel the peace of mind that I’d been craving settle in. By the time I received the written report on my tests, with its official looking diagnostic conclusions, I finally felt some closure.

Next: Moving Forward After a Diagnosis

36 thoughts on “Adult ASD: Receiving a Diagnosis”

  1. Ahhh, I know that of which you speak… Ted’s cognitive pattern is the very same as yours. He is quite literally both ends of the bell curve. I did this graphic for a post I still have in my drafts, http://lifeandinkdotcom.files.wordpress.com/2013/02/bell-curve.jpg. It was stunning when I saw him in both the 99th and 1st percentiles. Not that I was surprised really because, well it was sorta hard to miss living with him and all, but stunning still to think such disparity could exist in one person. But alas, he uses his strengths to help overcome his weaknesses, as we all must, and I am so very, very grateful for the strengths.

    I enjoyed reading your series about getting diagnoses, especially your reaction to the diagnosis, how it gave you closure, because I could relate to that, Asperger’s gave me a word I could put my mental arms around. It gave me shape, form, architecture. And yes, it made me feel less crazy. It allowed me to understand my son and thus a word gave me my world back.

    It seems to have done the same for you. Congrats to you for having the courage, curiosity and strength to go forward and answer your questions. All the best, always. Charlotte

    1. My bell curve is quite close to the graphic you made–IQ in the 98th percentile, some cognitive functions in the single digit percentiles. It’s an interesting place to live, for sure. ๐Ÿ™‚

      Thank you for the kind words. I have a few more parts in this series, mostly about moving forward and what I’ve decided to do with my shiny new self-knowledge. I can’t believe how long this series turned out to be.

  2. I’ve read all of the “I Think I Might Be Autistic” series, and I want to say thank you for sharing it (and all the other interesting things you’ve written).

    I’m an adult male (Norwegian, and about the same age as you) who got my “official” (still not sure what that word actually signifies) Asperger’s diagnosis about a week ago after a 7 month process. I first stumbled into a psychologist’s office for therapy sessions in late August 2012, and got a tentative ASD diagnosis pretty quickly. Then I had to wait for a few months to get an appointment with specialists that could give me an official (again, that word) diagnosis. That happened last Friday.

    During these months I’ve read a lot of blogs to see how other adults with ASD are living their lives. What are their experiences and thoughts? How do they perceive reality? I found many interesting people, you being one of them. There are lots of similarities. Sometimes when I see the oddities written out and I recognize the same traits in myself, I find it hilarious and unbelievable how I could go so long without knowing.

    The Asperger’s diagnosis didn’t exist when I was a kid, but still. How did they not see? Why did not I see, when I got older? Why did it take me more than 1/3 of a lifetime filled with non-negotiable problems to get to the conclusion that I had to figure things out and seek professional help? I’ve known for as long as I’ve had thoughts that I was different in a very fundamental and non-fixable way, so why did it take me so long?

    Getting the diagnosis felt both relieving and bittersweet (hopefully that bitterness won’t last for long). All these years spent fighting myself, it feels like I’ve wasted some of the best years of my life. We do the best with the hand we’re dealt, and as kids we accept the world as it is presented to us, I guess. Then it becomes a habit to hide and compensate, and the more intelligent you are, the better you get at faking it. But that doesn’t solve anything.

    I’m confident that life will get better now, though. Thanks again for taking the time to write and share! I’ll continue to read. ๐Ÿ˜‰

    1. Thank you for letting me know you read and enjoyed the series. There are a few more parts to come, mostly about moving forward with the knowledge that a diagnosis gave me and the questions it has raised. I completely understand the mourning process that you’ve experienced and the sense of disbelief that you/others didn’t recognize your ASD sooner. In retrospect, I find it nearly impossible to comprehend, but I’m relieved that at least I found out now rather than a decade from now or never.

      I’ve found that I’m increasingly feeling good about having a diagnosis and about being my autistic self, though I still occasionally fall back into a brief period of mourning or regret now and then. It seems to a process of steadily moving forward, though not always in a straight line. I hope you find a similarly positive path as you adjust to your new diagnosis. ๐Ÿ™‚

  3. I want you to know this series is really helpful to me. I’m in the saving up for evaluation stage (I know who I want to go to – this person specializes in adult learning disabilities and developmental disorders & has a lot of good things by word-of-mouth), but new scenarios are reallllly stressful to me if I don’t have some idea of what to expect. Like you, I’m seeking eval just for a “To know it’s not in my head” sense – though 17 people who know their stuff about autism to date have told me they think I have it and I usually score ridiculously high on stuff like the Aspie Quiz (last time I took it, I got 183 of a possible 200) so I think it’s pretty safe to say it’s not!

    So when I found this series last night, I in my typical me fashion stayed up way too late reading all but the last two, and then my partner reminded me I had work this morning, so I got up early and finished reading the rest! And now I’m kind of moving through work like a very fidgety zombie from lack of sleep.

    And knowing me, I’ll probably re-read the series as time goes on and I get closer to the eval.

    So thanks – you’re helping to make the step of actually going for evaluation a bit less scary for me.

    1. Thank you for letting me know – it’s great to hear that you’re finding it helpful. I completely understand your discomfort with unknown scenarios. Before making an appointment, I spent a lot of time searching online to try to discover more about the diagnostic process and so much of what I found was just really brief descriptions. It was frustrating.

      I’m sorry you’re having a sleepy day at work today, though. ๐Ÿ™‚ At least now you can hopefully feel less anxious about the evaluation when the time comes. It really does sound like you’re on the spectrum based on the feedback you’ve gotten from others and your quiz scores but it’s always good to have that “official” confirmation too. Best of luck with the process. ๐Ÿ™‚

      1. Well, I was bullied badly in school and my parents/school teachers were less-than-supportive to put it mildly, so as a result I have a hard time trusting myself unless I have “official” confirmation that my perception is right. So I do think the official diagnosis would be good.

        Thanks for the well-wishes. ๐Ÿ™‚

  4. Thanks for your series! At this point I’m still in the research phase, to get enough evidence to support my suspicion, and leaning toward being self-diagnosed instead (I know 100% that I am not a neurotypical, but not sure if I have enough characteristics to be diagnosed as an autistic, either, and for now I’m ok with that). But, I feel good knowing what to expect if I ever want to get an official diagnosis.

    1. You’re welcome! Thank you for letting me know you’re reading. The question of being diagnosed and identity is a very personal one and I support all of the possible options, including just being in that state of not being sure for as long as you like. ๐Ÿ™‚

  5. My journey to diagnosis started when my twin sons were both diagnosed. I bought Pretending to be Normal and devoured it in one day because it was so “me” that I couldn’t put it down. It fits me. It fits how I see myself. It fits how others see me.

    I went to a psychologist that specializes in children and adults with ASD and met with him for quite some time before he gave me the battery of tests that were used to diagnose me. Here I sit today with Autism Spectrum Disorder/Aspergers, Generalized Anxiety Disorder, and Depression. I feel like just getting the diagnosis and learning better ways to handle the things that set me over my limits has allowed me better control over the depression part of my diagnosis.

    I accepted my diagnosis with relief to finally have an answer. l have found such a wonderful community of people online who understand me and “get what I mean” when I talk about the symptoms and different ways that I interpret life in general. It is great to have this connection finally because I was completely lacking it in my everyday life before I finally had someone tell me what made me different.

    1. I still haven’t read Pretending to be Normal. I need to check it out.

      Getting diagnosed has definitely helped me with my anxiety and with my self-esteem. Having that explanation feels huge right now. And you’re so right about the online community! It’s validating and reassuring and just plain good to have found so many people like me, especially so many women like me. In my early reading about AS, I thought I was some sort of anomaly, but now I know that I’m far from it. There’s a great big bunch of us and our numbers seem to be growing as more adults become aware of ASD.

  6. Loved your comment on Dr. H’s chairs! When I met with my Doc the 2nd or 3rd time, I knew the dx was coming and what it would be. Even so, anxiety being ever-present, my comment to my Doc’s welcome was: “Who decorated your office? The gray wall paint, while in style, is a depressing color. Being a psychologist, and having had psych 101, I would think you would have opted for a happier color, or a neutral beige at the very least.” I think he mumbled that it was his wife’s doing. It made me laugh when I thought back on it. Thanks for that ๐Ÿ™‚

    1. I’m sure your psychologist was thrilled with your decorating advice. ๐Ÿ™‚ Dr. H was surprisingly immune to being surprised. Just about anything I said, he took in stride. At one point he said something like “you don’t need to be embarrassed about anything you’ve shared today” and I said “I’m not” and then after a moment “Should I be?” ๐Ÿ˜€ He just laughed.

      1. If they’ve been in the field long enough (My Dr.E has) they have to be immune – or ASD themselves or they won’t last very long ๐Ÿ˜‰

  7. This subject is close to my heart right now, after a month’s wait, I finally received my diagnosis a couple of days ago.

    It was a good thing my psychologist didn’t beat about the bush, she pretty much broke it to me straight away. however, upon hearing my diagnosis, I sat there for the next 50 minutes in disbelief and had to ask the hubby after the session if I have the diagnosis. I thought I was prepared for the outcome (both positive and negative diagnosis), yet I was surprisingly overwhelmed and at a loss; I was suppose to feel a great sense of relief and feel good about my diagnosis because it means I wasn’t born bad, instead I found myself in an emotional void all day (my default emotion).

    I guess I am still overwhelmed..

    So, I am now stuck with the “what now”, issues like how to tell people and explain what the diagnosis mean, and now that I have a “license to kill” do I keep my mask or show people my true self, will I dare? How to convince my family and relatives, I didn’t have much support there and I don’t envision understanding in the future either. So many things in my head right now.

    Thank you again for your brilliant blog and I’m looking forward to “Moving Forward” ๐Ÿ™‚

    1. I sympathize with everything you said here. I’m struggling with many of these same issues myself these days. I haven’t yet shared my diagnosis with extended family and don’t know if I will. It would explain a lot to them since we have very little contact due to my choices, but I’m not sure it would matter much at this point. I really have no idea and there’s no way to undo it if I decide to go forward, which is scary.

      My next few posts in the series are more questions than answers. Except for the one on disclosure, which I did a lot of research for because it’s such a tough subject. I hope that as I post them over the next month, you’ll share with me how things are going for you as well.

  8. I am still on the fence with getting an official diagnosis, though I think I qualify in some obvious ways. Part of the reason I have hesitated is because as far as I know, not much can be done for or about adults who’ve gone all their lives with this, and it might diminish my already slim job prospects. The reason I even thought about getting the formal diagnosis in the first place is because its in my family and I have been misdiagnosed with darn near everything else and don’t want future generations to have some of the experiences with that I did.

    1. I understand both sides of your reasoning. You aren’t required by law to disclose your diagnosis during the hiring process, if that’s any comfort. And you’re right, it’s not like a diagnosis will magically make life different. By the time we hit middle age (speaking for myself) it feels a bit late to be learning too many new tricks.

      However, there is a strong genetic component. Even if you don’t seek a diagnosis, it would be good to be on the look out for ASD traits among your descendants, since they may be more predisposed to being on the spectrum if you are. In the end, seeking an official diagnosis is a really personal choice and one that I don’t think you need to rush into. Good luck with whatever you end up deciding. ๐Ÿ™‚

    1. Thanks for the link. I read about your experience with the diagnostic process. Your wais test outcomes actually fit a pattern commonly seen in Autistic people so I found that especially interesting. It was hard to tell from your writing if you feel like the diagnosis you received feels like a good fit. I hope that you found some measure of closure.

  9. Oh, how I envy you that relieving moment of having the diagnosis. Right now I’m expecting a contact to some specialist in my home city, which will be sent to me by a psychotherapist I’m scheduled to meet in about… a year (yay, public health care). I couldn’t wait that long, so I wrote him a message asking for an advice (I had to pay for it, but not much), and I still haven’t got the response because he’s been very busy lately, but my desperate mother called him and he promised to send me that.
    She called him because of the last events. I had to come from another city to take my little sister for her “first-day-at-school” celebration and expected to come back right after my mother comes home. When I was already there the night before, she said she assumed that I will stay for a couple more days. I burst in rage and tears because she hadn’t told me that earlier, so I could prepare. I had almost nothing with me as I came for only one night and the thought of being stuck there instead of going back and spending incoming days as I planned was completely unbearable for me. If she told me before, I would stay longer as I always do when she needs me. But being unpleasantly surprised like that made me feel like I was being trapped and hit in the head and increased my already high enough level of stress because of the celebration next day.
    I’ve always hated events like this cause I never know where to go, what to do, and I’m petrified by a huge crowd of people seeking conversations. And now I had to worry even more because I had to be responsible for someone else. I know it’s a big day for my sis and I wanted her to remember it nicely and without the impression, that there was something wrong with me.
    Anyway, I cried hysterically until my mother let go. However next day she was very upset I wasn’t going to stay and she’s not sure if all of this is caused by some disorder, or whether I’m just selfish, which hurts me a little.
    Also, 3 different, closest people to me told me recently I seem to lack empathy, which actually surprised me because I’ve always thought of myself as of a very empathic person. But I guess they must be right in at least little degree.
    I’m very tired of this waiting and that awful fear that I will turn out as a non-autistic at all, just as you had it. Hopefully it will end within a year at most…

    1. It sounds like that was an incredibly stressful day for you! I hope you’re able to get answers about your diagnosis sooner rather than later. At least then you’ll have some peace of mind. I’ve also found that one of the biggest benefits of having a diagnosis is learning more about how my brain works and how to compensate for the challenging parts. Even without an official diagnosis, you might find strategies that autistic people use helpful so perhaps in the mean time you could experiment with trying out some coping strategies to help with stressful days like the one you described here.

      Empathy is so tricky because how we feel and how it comes across to others can be different. Even when I think I’m expressing that I care about someone, it can come out as very harsh and unfeeling. That’s a tough thing to overcome because it’s so hard to master the nuances of body language and verbal language that signal empathy.

  10. I was 55 year old guy during the diagnostic process earlier this year. I had a series of questionnaires mailed to me over a several months. My sibling was structurally interviewed over the phone. Unlike you I did not really prepare for r what I thought would be the first of several diagnostic interviews for fear of biasing it. After about 40 minutes discussing why I did not not do certain things during my teen and young adult years that “normal” people do, And my never caring about not being social during my adult years but now being sorry in my because I no network leading to no employment. After about 40 minutes? she said asked why I think have it and why I don’t (good eye contact in the last few years etc) she said “I have NO PROBLEM diagnosing you with Aspergers”” I was numb at the time. But the joy, relief when hit me after the interview when I got out to the street where I wanted to scream, “I AM AN ASPIE , I AM AN ASPIE”. It literally felt like waves of electricity were going through me. It was also a bit “what the hell is going on” scary having never felt anything close to that level of intense emotion and feeling my body might explode in the streets of New York. Since then I have discovered I usually have “inappropriately” late developing and muted emotions because I have continuously and subconsciously “coped” or “acted” to such a degree that I bottle things up. It still gives me chills thinking about that day and that feeling.

    1. I had a similar feeling when I finally got my diagnosis. Just immense relief and validation at finally having a concrete answer. Congratulations on your diagnosis!

      Delayed or muted emotions are very common with Asperger’s, as are (strangely) really intense emotions, often at seemingly inappropriate times.

      1. Thank you for the congratulations. And thank you for sticking through all the typos and misspellings.

  11. I’m not quite an adult (more like 17) but I was wondering if you could give me some advice. Recently, my mom read an article on Asperger’s and put a list of symptoms in front of myself and was like “You’re just shy, you’re not Autistic and here’s why.” I read the list and looked at her incredulously because everything on that list described me to a T. I think I said something along the lines of “That’s me!” She then proceeded to tell me that she just wanted me to be the one to say it.
    Now, I have the opportunity to get a diagnosis and to find out more about myself before I go to college and become overwhelmed with everything. I just can’t decide whether getting a diagnosis would help me or harm me at this point.

    1. Your mom sounds very clever. ๐Ÿ™‚ It’s good to see that you’re researching the possible benefits of getting a diagnosis on your own. I can think of two concrete benefits to getting a diagnosis now. First, once you turn 18 the people who diagnose children won’t see you. (Not that you’re still a child, just that most practices that see children use 18 as their cutoff.) Finding someone who can accurately diagnose adult ASD is much harder so if you wait a few years and decide you want a diagnosis, it will be more challenging to get one than it might be now. Second, if you get to college and want/need accomdations to make learning easier for you, you’ll need a formal diagnosis. Without knowing more about your situation I can’t say what the specific downsides might be if any but if you’ve read this series you probably have an idea.

      Whatever you decide to do, good luck with it and congratulations on your discovery.

  12. I wonder what it says about me that it took me about 30 seconds of thinking hard about it to realise what was wrong with your response to the doctor asking “Whatโ€™s new since you were here last time?”. Pointing out that he’d added chairs struck me as a perfectly reasonable and normal response.

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